Cold Caps Users Past and Present, to Save Hair
Comments
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I think it was Geewiz who said the cold helps with hair growth - then would be be good to use caps after chemo sessions are finished to encorage more rapid hair growth?
I wish PCC could get the price down - it is just too expensive for most withall the other out of pocket, OTC stuff you need to buy.
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Nancy....wishing you positive thoughts today and tomorrow. Can you believe how quickly it went? I am following so closely behind you...Monday for me. We are so close!
BIG HUGS!!!
Annie
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Congrats Nancy. You are heading for your last and I'm off for #2. Have a great day and we can all see your smile today.
Susan: You mentioned someone who lost their hair and then did PCC's bald and ended out with a full head of hair. What did she do to protect the entire head from frostbite. I was thinking about this last night as I was preparing for today.
Thanks, Arlene
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Maria great pics!! Hair looks great! Nancy you did it! Congrats on finishing!!! Sharon
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i think my hair is just like yours! hope it looks as good as you. I start with my PCC on tuesday. i'm on AC/T. ... hope i have the success you have! you look amazing!
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Hi Ladies: Here I am at infusion and she wanted to hold off the Herceptin until after a full cardiac evaluation. Gave me the option and I referred back to her as the doctor. She opted to wait as she said she would be doing me a dis-service if I had a problem from the Herceptin. We can make it up at the end.
She did say lots of ladies go through chemo and do not take the Herceptin and are fine. She also said my Stage I cancer is basically itty bitty.
My caps are so COLD today.
Arlene
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OMG Annie, you are almost finished too! Wonderful. I still have a LONG way to go, 2 (almost down) and 4 to go.
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Hi Sam! I am new here and looking into cold caps. Do you like the Elasto Gels? I have not yet any chemo. But, I have been told I will start in the next couple weeks. I just want to have something to protect my hair before they tell me it is time.
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Hi everyone~ 13weeks PFC today! Really starting to believe I'll keep my hair. I washed my hair on Sunday..and just seemed to shed and shed....I say this b/c I think we all have been told so many times that the caps won't work or that we will lose our hair that the anxiety is so great. On Sunday I was sure I might still lose my hair..even as the rest of the hair on my body grows back! Wanted to just share that perspective as many of you stress....trust the caps and the idea of scalp cooling. It works! It will work!! I think Frank Fronda and Penguin Cold Caps have perfected the experience or at least have the most research and experimentation on what works...it is expensive ...but should be covered as wigs are!!!under insurance.
Using the blow dryer now and a little hair spray! Soon I'll wash my hair in warm water again.....
BTW ladies the pictures are great! It helps others so much I think to see where everyone is...sending good vibes to all the cappers!0 -
My oncologist is pleased that I've been able to save my hair having just finished 4 rounds of Taxetere/Cytoxin. First at this major Dallas medical center to do so.
Would those of you who have taken Adriamycin and used the Penguin Cold caps let me know how it worked for you? I'd like to be able to report those results to my doctor so she can tell other patients on other protocols about the value of PCCs.
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Welcome MPlace: We are sad (but happy) to welcome you to the group. I'm using the Elastos too. They are much less money and easier to use (from what I've heard) from the PCCs. I am (right now) undergoing chemo #2 (TCH--without the H today) and the nurse thought this was my first treatment when she saw me. The doctor went through my hair looking for bald spots and found none. BUT I LOST a lot of hair this week...TONS to be exact but they Center is excited as I am. The last few days, I've panicked like a crazy person over the loss but you have to be so dligient with the caps.
There are some great, knowledgeable folks on here who have been here a while and happy to share. Most are PCC users though.
Good luck and ask away.
Arlene
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Hi Mplace -- as the common greeting goes, sorry you have to be here, but welcome. This is a great forum and my wife Liddy and I owe a great deal to the wonderful advice and support from this community.
Liddy has so far had good success with Elastogels. She is now just past TCH #4 and has had only a couple of brief episodes of shedding. It may be her individual response, but likely also her extreme discipline in following the protocol -- 1 hour before chemo to 4 hrs after, and every day for 2 hours in between infusions. We also followed great tips from motherofpatient and Torigirl who had detailed instructions on how to keep the EGs cold, straps to hold them in place etc. I'm happy to share if you want moreinfo. Hope this helps.
Good luck and best wishes
Sam
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sebm9 I would love your list, if you don't mind
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Hi All Thanks for the compliments, try to hang in there. Here is another link for those who could not open the pictures.
Just curious SamDobbs, how are you cooling the caps down daily? Are you dry icing them the entire time?
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Hi nmoss between tx we just freeze the EGs in the freezer compartment of our kitchen fridge. They get down to -20C and we change them every 15 minutes. They only refreeze after several hours but we just cycle through the 8 we have for 2 hrs each day.0
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Sam-
I am so happy to hear that Liddy is doing well with the EG caps.
I'm praying for continue success for her and all the ladies using any of the cold cap protocols!As for me, I will be 15 weeks PFC tomorrow and my hair is hanging in there wonderfully. It's growing everywhere and filling in around my ears (I have sideburns! LOL!) and the nape of my neck. I started using warm water at 13 weeks PFC and am washing about 3 times a week but still using my Pure Results shampoo. Shedding is back to normal...but always a little more on the days I wash because I don't mess with it much in between washings.
The only thing I have not attempted yet is coloring my hair...I need to badly, but don't have the courage.....yet. Even though there is no doubt in my mind that my hair will stay, I still can't color it yet....My husband will return from his deployment first week in June (God willing), so I hope to be able to color it before he gets back....that leaves me another 5-6 weeks to get my courage up there!
I finished all active treatment (rads) on April 11th too!
God bless us all!!
Tori
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Thanks Tori couldnt have done it without your advice!0
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Thanks Tori, couldnt have done it without your help and support.
Many congratulations on finishing rads and all active treatment!
Sam
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yizbieta (and anyone else who is interested): pm me your email address and I'll send you my writeup of my experience/method on PCCs and also some other tips gathered from various sources, including PCC, Rapunzel Project, and my chemo nurses.
ArleneA: I don't remember exactly, but I think the woman used something like a nylon pantyhose -- something very sheer but still providing a physical barrier -- to protect from frostbite. (Frank Fronda recommends using a piece of thin medical gauze if there are ever frostbite "spots"). The other key feature of PCCs (and underappreciated, imo) is that the gel filling is not only designed to maintain the necessary extremely cold temp of approx. -30C for nearly 30 minutes, it also keeps the temp just above frostbite level.
My husband is on the phone right now with the husband/helper of a woman beginning chemo and PCCs tomorrow. Bless the helpers, they are awesome. There should be a place on breastcancer.org for the helpers, they do such enormous work!
Susan
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Hi All:
What a relief to have done the final TCH!!! It is hard to believe I did it and it is over. The concentration on Cold Caps helped a lot. It takes your mind off things and splits your attention, so you don't obcess about the chemo, but pay attention to the changing of the caps. At home you check the shedding and try to deal with any side effects of the chemo, so you aren't dwelling on the Cancer issue as much as those who don't do Cold Caps and look in the mirror every day and see a bald head or a wig, or a bald head under a scarf or a hat, but still a bald head. This is a greater reminder of Cancer issue all the time. I think we are reminded that we are surviving every day!! We look healthier and that translates to feeling healthier. We also have some control over something, and we are directing part of our survival and this is very empowering!
To the person who wishes PPCwere cheaper--well the are--after month three(3) and beyond, they lower the price to 50 lbs sterling-about$150 American dollars.
As far as how long to baby your hair, this is what Frank wrote to me when asked him last week.
How long do I:
Continue limited washing once a week.?--continue at least 3 days afterwards and keep to a minimum and use only below body temperature water on your hair--Cool, not cold for a few months to six months and continue using gentle non chemical or organic products.
Continue to blow dry on cool setting?--Keep using on cool setting for six months. You can use heat on ends, only if you have long hair, but NO DIRECT HEAT on the SCALP!!!
Not color my hair?--Wait at least a month ot two and then only use VEGETABLE COLORING--NO PEROXIDE OR AMMONIA BASED COLORING until six months after chemo.
Not cut or trim my hair?--You may trim your hair a little at a time off ends--so no great chunks of hair off--suprisingly the roots don't like this. Wait for a few months (3 or 4) for regular haircut--six months, if you can possibly wait.
Continue to use non-Aluminum deodorant? when can I go back to using my normal deodorant or anti-persperant?--It is not recommended that you use deodorant containing aluminum, because it is a binding agent and is tranferred all over the body, including the scalp. If you feel you must use such a product, wait at least six months after chemo is over.
Continue to not wet my hair in the shower? Can I stand under a rain shower faucet in my shower.--Heat is the thing to avoid, so keep water under body temp--cool water. Don't stand under shower head with your head unless you like to take cool showers. Otherwise direct shower head to body, not your head. Continue for 6 months. You can take warm showers, just don't get on your head.
How long do follicles remain fragile after all the chemo treatments are completed?--AT LEAST SIX MONTHS!!
Can I wear a ponytail?Use clips to keep off my face or to put it up?--Just be very careful to avoid putting too much strain on an individual patch of hair and be careful not to pull on the roots--it takes 6 months before the follicles fully recover.
A note on hair shedding:
Hair shedding is normal. It even happens normally without Chemo. Cold Cap Therapy works by protecting the young to medium hair follicle bulbs. It doesn't protect the follicles that are in their "OLD AGE" in a natural hair follicle cycle. So therefore, these old hair follicles die due to the chemo drugs, thus hair shedding of these old follicles occurs both naturally and at increased speed with the chemo drugs. Please remember everyone's Metabolism is different and therefore shedding occurs at different times and in different amounts.
Hope this answers some of your questions and fears.
Keep Poisitive!!
Nancy
PS Motherofthree: Hooray for you too!!!
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Dear Sebm9
Thank you for the valuable information. I too live in the SF bay area and I would like to contact you. re your offer about tips, chemo nurses etc. I am receiving some resistance from nurses at the large clinic I attend re cold caps . I do not know what you mean by "PM me" your email address. How do we contact each other confidentially? Thank you
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Keeppositive: thank you for posting Frank's rec. This is very helpful.
Would love to know how any of you are doing with cold caps if on TAC. My oncologist is amazed that this worked for me on TC, but is telling others on TAC that it won't work for them. Would like to give oncologist reason to offer Cold Caps to those on TAC, too. Making progress, though! Thanks.0 -
Serenity: Click on anyone's name and you'll go to another screen and there you will see "Send a Private" Message and there you can "PM" that individual.
Arlene
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Hi SamDobbs thanks for the info! Arlene how did it go? Thinking about you today.
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Hey NMoss: It went well and the doctor was pleasantly surprised that I still have my hair and even checked my scalp and I mentionedd and she agreed, no bald spots but she could have been looking for scalp mets, who knows? She highly suggested that I not have the Herceptin until I have a full cardiac workup which happens before my next treatment. She did tell me that lots of ladies don't have the Herceptin and do just fine...she was probably trying to make me feel better.
So, now the wait for the 2-3 days of yucky downtime.
THANKS so much for asking.
Arlene
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Hi ladies. Your posts are so helpful. i start on Tuesday AC/Taxol. I did a test run last night and couldn't believe how cold the cap is. Please tell me it gets easier?? Wow!! Wish me luck!
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Hi serenitywisdom:
To PM somebody, click on their user name, and you'll get a new window. To the right side of the screen, you'll get an option to send that person a personal message.
But, if you just email me at sebm9@earthlink.net, that works too! :-) I'm happy to help you navigate it all!
Susan
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Hi Livcar - most, if not all, of us have other drugs on board that truly lessen the cold. Do not worry, it seems to be cold for about two minutes, then you acclimate!
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So, a year after Penguin Cold Caps and this is a photo of my hair after highlighting...
Still a bit thin in the front (hubby says only I would notice.)
Best wishes to all the Penguinistas...I really am greatful to Frank Fronda and the Cold Cap team.
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LivCar: The caps really are tolerable and only cold in the very beginning. The Benedryl, I think, helps too and if you get Ativan that helps a lot.
Good luck!
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